I Get Knocked Down, but I Get Up Again

Gracie Bagosy-Young packs a punch; with her take-no-hostages attitude, she is a formidable chronic pain warrior. She is the mega-force behind Gracie Gean Chronic Pain Advocacy and Consulting and the non-profit GG Pain Foundation. Her mission is to provide support, resources, and tools for managing the complexities of living with chronic pain, for people challenged by conditions as varied as CRPS, fibromyalgia, Lyme disease, cancer, and AIDS.

Jenny Picciotto

Gracie suffers from both CRPS and Lyme disease. Her journey with chronic pain began when she was a divorced single mom with two small children. She developed CRPS after undergoing a series of surgeries to address wrist injuries sustained while kickboxing and soon found herself unable to work. The classic CRPS symptoms of pain, swelling, burning and allodynia affected her right hand, wrist, and forearm.

Like so many of us, she wasn’t given much information about her diagnosis. With no support system at home, she had no one to talk to about the frightening changes in her body. She began the process of trying various treatments, most of which did nothing to alleviate the pain. She found herself feeling that she was stuck in a “completely dark and lonely place.” A place she never wants others to have to experience.

An electronic engineer, Gracie wasn’t about to stay down for long. She began doing what she was trained to do: find answers to the problems she confronted. She went online and began researching CRPS, and looking for online support groups. She calls the people she met there her “support system saviors.”

The computer became her lifeline. In the privacy of closed support groups, she found a community of people who shared their experiences and learned from one another. There were nights when she didn’t think she would survive until morning, but she found sustenance in the virtual community, where strangers reached out to one another. “When I was raw, vulnerable,” she says. “They helped me pick myself up.”

Before CRPS, Gracie was a confident, active full time mom with a full time job, and a full schedule volunteering. In an article she wrote for the National Pain Report called “CRPS Took My Identity – I Took It Back,” she writes about a process of redefining herself. Taking stock of the parts of herself that living with chronic pain could not take away, she discovered that she could also be an empowered advocate with “additional value in this world by helping others.”

While looking for support, she began creating support for others. She kept detailed and meticulous notes, photos, and videos from her treatments. She has since shared her experiences publicly, writing and talking about the various therapies she has tried, from mainstream treatments such as nerve blocks, to experimental therapies such as Calmare, ketamine infusion and transcranial magnetic stimulation. She believes that by sharing her successes and failures, other people can learn about treatment options their doctors may not have discussed with them. Her success challenging an insurance denial of coverage has provided ammunition for others seeking access to new therapies.

Putting her considerable skills to use in the service of other pain patients, Gracie is once again working in multiple directions. She believes that knowledge empowers, and that every patient should have access to it. She advocates for others, while helping them develop skills to advocate for themselves. Patients are never charged for her services.

The heart and soul of her mission happens “where the rubber meets the road,” working one on one with pain patients. Gracie helps individuals find information and resources, providing consultation and other services such as medical records management, insurance guidance, and patient/provider mediation. Her typical day includes organizing and mailing research information, driving patients to appointments, home visits, writing for her blog, and working with individuals by phone, Skype, and support groups she hosts online.

She collaborates as a volunteer for numerous nonprofit pain advocacy organizations including US Pain Foundation, iPain, RSDSA, Fibromyalgia Care Society of America, and the Lyme Advocacy Network of the North Shore. She is also a contributing writer for the National Pain Report, maintains a blog, and is active on Facebook.

She is the organizer of the Midwest Pain Treatment Education Expo, which marked its 3rd annual event in last August, bringing together a diverse group of patients and health professionals, including 6 speakers and 21 exhibitors. This 1 day event attracted 227 attendees and was streamed to 2,123 virtual attendees. She is already organizing sponsors, donors, and speakers for next year’s Expo. The 4th Annual Midwest Pain Treatment Expo will be on August 13th, 2017 at the Hilton Hotel in Northbrook, IL.

To fund her volunteer work, Gracie puts her professional skills to work for hospitals and clinics, with web consulting and literature editing. She is also a frequent speaker at chronic pain events. She invests earnings back into her organization to fund her volunteer activities, ensuring that patient advocacy work is always free of charge.

Gracie was the keynote speaker at the RSDSA’s “Treating the Whole Person: Optimizing Wellness” conference, which was held last October in Rosemont, Illinois. Her keynote topic was “Straight Talk about Everyday Maintenance for CRPS Warriors.” When asked if she could share three tips from her presentation, she said that everyone can benefit by managing their diet, their surroundings, and utilizing their pain management tools.

I also asked how she manages all of her commitments and her busy schedule. “How do I do it?” she replied, “I just do! I don’t want anyone to ever be in a completely dark and lonely place, to feel like I did. I reach out to find people who don’t have anywhere to go for information, or who don’t have the skills to navigate the challenges of living with chronic pain.”

With big goals, she still faces her own limitations. Working only as much as her conditions allow, she practices self-care every day.

Gracie’s story is inspiring. While searching for her own support, she became an “unintentional advocate” for others. What was once a search for her own strength is now a calling to bring hope to others. She makes it her business to advocate for those who have been knocked down by chronic pain. She knows that with the right tools, you can get up again.

Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.

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Hi Jenny, so good to hear from you again. I can only imagine your life in Hawaii 🙂
Thank you for your post re: Grace. I recently visited her site and wondered how she does it all?! Your post is encouraging.
I have been feeling very lost the past few months… I live alone in my pain and have no life, so what is my purpose in life? With my levels of pain I just cannot imagine doing all of that. Yet, I know I need to reinvent myself and find purpose.
I desperately need to find a way. Perhaps I will reach out to Grace one day 🙂
God bless you both for all that you do to help others. Maureen

I wish I could sit down and talk to Jenny! While reading this article, I wanted to ask her about my insurance company denying coverage for Urgent Care visits I was forced to use due to no one else helping me.

I was in horrific pain with no medication. Our wonderful government took away my pain medications with their new “laws”. The ER would not treat my pain because,”It’s not something we do here in the ER.” I had no where to turn so I saw a physician at Urgent Care who was kind, compassionate and treated my pain immediately.

I received an “Explanation of Benefits” from our insurance company who stated that this clinic was “out-of-network” so they would not cover any of the charges.

I called them immediately to inform them that seeing a doctor at the Urgent Care was my only option at the time. They could have cared less.

What I want to know is, since this was my only option for care, shouldn’t they be required to cover the charges?

If anyone can help me solve this issue, I would sincerely appreciate it.

Thank you and God Bless Jenny for all of her hard work and determination in making chronic pain patients lives easier!